I’m sorry, Ayesha. You’ve gotten a truely crappy hand dealt to you, as did your friend.
Of course you’re scared–anybody would be. But you keep hanging in there. You have lots of people pulling for you.
You take care.
After I posted last night, the LIONsob took me to Galveston. On the way he brought me a rose. After we drove along SeaWall Blvd. for awhile we stoped at a little park like area and had a sandwich looking over the bay.
The wind picked up and blew my fries off the table, and these rats, not mice people ** rats ** came up from the big rocks at the foot of the seawall and started taking them. We actually sat there and watched them, they came within 2 or 3 feet of us. EEEEEK ! But it was kind of cool watching them after the creepieness (is that a word ?) wore off.
After that we rode across the ferry to Boliver. While we were on the ferry I walked to the front and took my rose.
I started tossing the petals into the water.
One for my Uncle Billy who was a hepper, he died last month after developing liver cancer that spread really fast ( that does happen to some of us.). One for Rick who I posted about above. A few more for other heppers from the Hepatitis Central board who have died recently. And one for me. Then I tossed the rest of the rose in as a tribute to those who are still fighting.
I want to kick and scream and yell ! It’s not fucking fair ! It’s just not ! My God there a babies being born with this ! Children going through the hell of combo. And it is hell, have no doubt. During the two weeks I was on it it took every bit of energy I had to shower and dress, then I had to lay down. There are people who unlike me, didn’t do one damn thing wrong who have this. They may die !
And there is not enough money for research for new drugs, there is so much ignorance about this it make me want to puke. A GI doctor actually told my Aunt that ** anybody ** who has this got it from drugs ! That is so much bullshit I’d like to shake the bastard till his fucking teeth fall out ! A doctor my ass. an idiot is more like it.
Then there are the people who won’t touch you, not even to shake your hand. I am a hepper damn it ! I am not a lepper (yeah I know the spelling is wrong, but it looks better that way)!
If I did not have these boards I would lose my mind ! I tried to talk to some people last , people who I know love me. But you know what, they only want to hear the upbeat me, they don’t want me to say I am afraid, that I’m so angry and sad I could scream sometimes. Nobody can be on 24/7. At least I can come here and be real about what I feel, what it’s like to face this everyday.
Fuck ! Now I’m crying again ! Euty, Uncle Beer if my language makes this pit material it won’t bother me if you move it, but I am going to leave it as is. This is how I feel. I’m going to bed now. I’ll be back later , hopefully in a more Ayesha mood.
Sorry guys. 
{{{{{{Ayesha}}}}}}
I am sending you a ton of white light. I can only imagine the pain and frustration you are going through. Reading your posts and watching you go through this makes me resepct the power of the disease and all of you who are fighting to beat it.
Good Luck and keep us posted.
{{{{Ayesha}}}}, you are in my thoughts every day. I didn’t bring this up before, because I value my privacy, but I have chronic Hepatitis B. Luckily, my liver is functioning just fine, so I have opted not to have treatment at this time. Right now, my child is still very young, and needs me healthy. It’s scary, because I don’t know if I’m taking years off of my life by delaying treatment, but I also can not afford to be laid down by medication while I have a little one who depends on me. I’m not even going to talk about how scared I am that we will be denied for health coverage every time my husband switches jobs.
I understand too well what you mean by the stigma. To be honest, I don’t tell people unless they have a need to know. In this country, Hep B is considered a disease of junkies and homosexuals…i.e. people who “deserve” it. What bullshit! Let me tell ya, it’s damned awkward to explain to somebody why I won’t let them share my drink. For the record, I got it from my mother, who has chronic hep, who probably got it from her mother. Not that it should make a damned difference where I got it, but I can see the wheels turning in people’s heads when they hear the news.
The only good thing about Hep. B is that there is a vaccine. Get it. Make sure your children get it…I think it’s now required for school, but if your children are teens make sure they’ve been vaccinated.
Ayesha, I wish so much that you didn’t have to go through this. The fact is, that although you do need to take precautions, Hepatitis (with the exception of Hep A) is not that easy to catch. You certainly can’t catch it from handshakes or hugs. Personally, I don’t allow people to eat off of food that I have biten or drank from, but it’s very unlikely that people could get it that way. My mother in law won’t eat food that I’ve prepared. What? Does she think that I go around cooking food with blood and other bodily secretions on my hands? I take the same basic precautions that everybody should take, in fact it’s probably safer to eat my food because I am so scrupulous about washing my hands and cooking utensils.
Sorry…I didn’t mean to make this about me. Right now, I am very healthy, and the fact is I may never get sick or I could die in 10 years. It just makes me so damned angry that people like Ayesha, good people, are made to feel bad about having a disease. We all eat, breathe, have sex…some of us are unlucky enough to get sick from it.
Tatertot,
Honey, please, please , please I beg of you Start treatment ASAP. Everyday Hep no matter which type, is active in your body is another day it has to damange your liver. Don’t drink alcohol at all.
There are vaccines now for A & B, my doctors made sure I have had both.
I don’t let anyone drink out of my glass, and I use bleach in my dish water. That is just smart to do anyway. The LIONsob’s Uncle lives with us, he drives a taxi. He used to bring home all kinds of nasty colds and we would all get them until I started using bleach in my dish water every time.
Hep C is only blood to blood. My son doesn’t have it, the LIONsob doesn’t have it . I won’t say C can not ever be transmitted sexually, but it is very very rare. Usually a monogamous couple will not pass it one to the other. Unless there is blod involved anyway. I take the extra precautions for my own piece of mind. If I am a guest in someones home I tell them I have this, and I will usually ask if I can use disposable dishes, or if that isn’t acceptable to them them I tell them to please add bleach to thier dish water.
The site that is linked in my sig line has some good info on Hep B. please check it oout. I don’t know if the treatment for the two is the same or not, but I do knopw it would be better for the kiddo to see Mommy ill from treatment than to have to bury Mommy befor he graduates. I don’t mean to be harsh. I just can’t lose anymore friends right now tater, you know?
I do not deny it my fault that I have this. I probably got it either from a tattoo or a drug needle (I was a bad girl back in the day after all) I can deal with me having it. It’s the people who got it through no fault of their own that tears me apart. The transfussion recipentes, the babies born with it, the nurse who accidently pokes herself after giving someone a shot, the teen who got her ears pierced the list goes on and on.
I’ll climb off my soap box now.
Oh, Ayesha, please don’t worry about me. You are too sweet. Fact is, I am under a doctor’s care, but since my liver functions are great and I have no symptoms, we’ve made the decision to hold off treatment. I have blood tests every six months, and if my situation changes we will re-evaluate my treatment.
I will however, check out your link. 
I think the treatment is pretty similar…the one I hear about most is inteferon. Hep B is transmitted by mostly by sex and injections, although there are lots of people, like myself, who got it at childbirth. My understanding (from what my doctors have told me) is that people who have chronic hep like myself, and got it at childbirth, can have a wide range of possible outcomes. I may never develop liver disease, or I could get it tomorrow. I do baby my liver, and take good care of myself in general.
The scariest thing for me was that none of us, including my mother had any idea that this disease was in our family until my sister had her baby. Nowadays, they test mother’s for Hep, but back then they didn’t. I was so scared that my husband would have it, but he tested negative. When my son was born, he recieved gamma globulin (sp?) and the vaccine at birth, and he gets tested once a year (more for my peace of mind then anything else). My husband has also been vaccinated.
Ayesha, I hope you do not blame yourself for your illness. It’s not your fucking fault. Don’t make me fly to Texas to beat this into your head, girl! You are just as blameless as I am in having this disease. Fact is, back when you were a young lady, nobody really knew about this disease. You are doing a world of good by educating people on this board about the disease and letting them know how they can take precautions to protect themselves.
And, hey, why don’t we start our own clique of posters who have chronic, social stigamtizing diseases.
Ayesha, sweetie, I was just reading the Hep B FAQs on the link you gave me, and I found this:
I just don’t want you worrying about me, okay? Of course, I will be monitored for this for the rest of my life, but right now I am doing wonderfully.
Oh, and I made a mistake, Nicholas was given Immune globulin. I am so thankful that they were able to prevent him from getting this disease! I was even able to breastfeed, which was something I worried about throughout my pregnancy. The problem was finding a doctor who knew about this disease and could give us real answers.
Tell LionSOB to give you a big hug and kiss from me. One day I’ll have to make it up to Houston to see you, you are truly a remarkable and very special woman. I’ll never forget the link you gave to me when I had my miscarriage…you’ve been an angel to me on this board.
Poor Ayesha
I will be praying for you and for guidance for your physicians. God rest Rick’s soul and the soul of your uncle.
Brida
I start back on the pills Sunday guys, wish me luck. I hope I don’t break out again. There are some new treatments on the horizon, if my body can’t tolerate this I pray they get here soon !
I didn’t reply earlier (I find this stuff nearly as hard as being sick, although I know it isn’t), but I do send my best wishes your way.
{{{Ayesha}}}
I wish I could do something to help other than wish you the best of luck.
I worked with someone that had Hepatitus B and C. They also had fibromyalgia. She then got pregant and had to lay on her side for the last two months. You could see how bad she felt. You can’t do anything, but listen and support them. The pain is their own to bear. She was a friend that I haven’t been able to see for the last four months.
I would touch her and talk to her like a normal person. It was safe to touch her. We have a body fluid blood pathagon program in place at work. The people that worried me more were the ones that talked badly about her. They had the additude that she would give them someething, but they didn’t need to follow the safty rules. They knew they didn’t have anything bad, so they could ignore the safety policies. This problem was addressed in a number of ways and corrected, after my talking to personnel.
Phobia,
Thank heavens for people like you. It is a rare friend who will look beyond the bullshit, get the facts and see the person and their pain. I am proud to know people like you and 99.99 % of the other dopers here who take the time to care about others. I hope your friend will be ok. I can’t even imagine having to deal with 2 kinds of hep, fibromyalgia ** and ** carrying a child ! That my friends is one hell of a woman. I for one am in awe.
She had a boy, and best yet no birth defects. That was a high probability. Her husband had to take off a lot of work after the birth. She was sterile. It’s not the first seriously ill person I’ve seen that has had their ovaries start back up the egg output.
{{{{{{{{Ayesha}}}}}}}}
you can do it hon.
{{{{{{Ayesha}}}}}}
Hang in there.
Good luck with the pills again, Ayesha. We’re all pulling for you.
{{{{{{Ayesha}}}}}}